Home Care of Patients with Head Injury: Are We Neglecting the Caregivers?

Abstract

In the absence of professional long-term care facilities in India, home care to patients with head injury is usually provided by family members. In this scenario, the mental health of the caregivers remains an important issue. This factor is constantly neglected by the health care providers and the society alike. With the result, the caregivers are prone to depression, anxiety, and other forms of mental illnesses. This also has a negative impact on the recovery and rehabilitation of the head injury survivor. In this article, the authors have reviewed relevant literature to find out the extent and prevalence of this problem among home caregivers of patients with head injury. The authors have also highlighted the possible measures that the treating neurosurgeon and the society can take for effective management of these issues. Their aim is to make the neurosurgeon and other health care providers aware of this issue and its various ramifications.

Keywords

caregiver - depression - anxiety - head injury

Introduction

Management of head injury continues to be a vital part of neurosurgeons work in most organized setups. The rapid development, both in urban and rural areas, has come at the price of increasing incidence of head injury all over the world. Worldwide, now trauma has emerged as the leading cause of death and disability for the population younger than 45 years.[1] The advent of better operative and intensive care facilities has meant that mortality rates have gone down. However, many patients with moderate and severe head injury are discharged in a state in which they are dependent on family members for their day-to-day activities of living. Some of these patients are discharged with low Glasgow coma score (GCS) on tracheostomy tubes, indwelling catheters, and nasogastric or gastrostomy tubes. In India, the already over-burdened health care system is unable to provide a hospital bed for these patients beyond a time limit. At the same time, professional long-term care facilities are virtually nonexistent. Home care professional nursing is still an emerging concept available at a prohibitive cost only in metros. Therefore, the responsibility of home care lies usually with the patient's immediate family members. In their practice, we usually see spouses and parents as the major home care providers. This is a daunting task for people who have varied levels of understanding, education, and patience for this job.

Extent of the Problem

In various studies, it has been constantly noted that health care providers focus mainly on the patients while ignoring the needs of the family that cares for the patient.[2] Initially, Mauss-Clum and Ryan[3] investigated the nature of family distress in such cases and found that 80% of the caregiver wives are depressed along with 57% of the survivors. Linn et al[4] used a standard outcome measure in the form of Symptom Checklist-90 (SCL-90)[5] to study 60 spouses and survivors at a weekend retreat. They found that 73% of spouses and 70% of survivors exceeded the cutoff levels for depression. In terms of anxiety, 55% spouses and 50% survivors exceeded cutoff levels. Interestingly, no relationship was noted between the distress levels in the spouses and the severity of injury. Using Brief System Inventory (BSI),[6] Kreutzer et al[7] [8] studied 62 family members and found that 23% family members exceeded cutoff for depression. The criteria for clinically significant depression were met in 47% members; 32% of those interviewed exceeded cutoff for anxiety, 25% exceeded cutoff for somatization, and 33% exceeded the cutoff for Global Severity Index (GSI). They also noted that spouses showed greater distress levels as compared with parents, and injury severity was not related to the distress levels. Similar findings were elicited by Gervasio et al,[9] who also used BSI and found that 22% family members exceeded cutoffs for depression and 32% for anxiety. Cutoffs for somatization and GSI were exceeded in 17% and 23% members, respectively. They also found that spousal distress was more than parental distress and injury severity was not related to the distress levels. Many other studies that have addressed the caregiver needs, distress, and problems include those by Wade et al,[10] Campbell,[11] Arm-strong and Kerns,[12] and Engli et al.[13]

Gillen et al[14] evaluated 39 mothers and 20 spouses using the National Institute of Mental Health Diagnostic and Interview Schedule (Revised). They found that one-half of the members met the criteria for major depressive disorder. Like previously mentioned studies, they found that injury severity was not related to the depression. However, there was no difference between spousal and parental depression in their study. Incidence of parental depression (77%) was more than that of spousal depression (47%) in the study by Douglas and Spellacy[15] who used the Self-Rating Depression Scale[16] for assessment. Ponsford et al[17] noted no significant differences between spouses and parents regarding depression and anxiety and that the depression was unrelated to the severity of injury. Kreutzer et al[18] used BSI-18[19] as the primary outcome measure and found that the distress levels among spouses, parents, and other caregivers were comparable. They also found that levels of depression, anxiety, and somatic symptoms were equally prevalent. The proportion of participants with one, two, and three elevations was 17.9, 5.5, and 10.6%, respectively. Approximately two-thirds of participants had no scores exceeding cutoffs. A multitude of other studies also document that the rates of depression in caregivers of head injury are in the order of 25 to 61%.[20] [21] [22] [23], Wade et al[24] studied whether parents of children with traumatic brain injuries (TBIs) report increased injury-related burden and distress. Attrition was higher in families in the severe injury group, but the family function was moderated by social resources. Families of children with severe brain injury and low resources reported deteriorating functioning in follow-up. The importance of family function in these cases cannot be overestimated. Nabors et al[25] noted that most caregivers of individuals with TBI report unhealthy family functioning. Ennis et al[26] reported that caregiving is associated with stress due to the intensity of continuous care being provided at all times. This may be associated with adverse cognitive, emotional, and other impairments in the caregiver. It is pertinent to note that caregiver burden and stress is also associated with negative outcomes in individuals with TBI whom they care for. Such findings have been noted by Sander et al.[27] Hence, satisfactory recovery of the survivor is also linked to the mental well-being of his/her family and home caregivers.

What Can We Do to Help?

Regardless of the hospital and the place, we are well aware of the acute lack of long-term care facilities and domiciliary nursing in India. Most neurosurgical departments in India are over-burdened and have to discharge patients who require nursing and rehabilitative care at home. The families usually hail from rural areas and have weak socioeconomic background. Syed Hasan et al[28] have pointed out that recovery of the brain injury survivor can enhance the entire families’ closeness and bonding as well as improve the mental status of the caregiver. Carlozzi et al[29] identified the aspects of health-related quality of life that are relevant to caregivers by analyzing nine focus groups of caregivers of moderate and severe brain injury. Caregivers were most concerned about their social health (42%). Other important issues included emotional health, physical health, feeling of loss, and cognitive health. We will have to keep these factors in mind while we propose the following measures relevant to their patients and patients’ families:

1. Adequate training and confidence building in the attendants prior to discharge. The instructions for catheter, tracheostomy, and feeding tube care should be clear and in the local language of the attendants. The attending neurosurgeon and nursing staff have an important role to play in this matter.

2. During OPD visits, the attending neurosurgeon should talk to the family and caretakers in addition to patient assessment. If the caretaker(s) show features of anxiety or depression, prompt recognition and psychiatry/psychology referral are warranted. This should be done regardless of the severity of the injury as most studies indicate that the severity of injury has no bearing on the distress in caretakers.

3. Social support groups/nongovernmental organizations (NGOs) can help in creating a feasible environment for the home care of such patients.

4. Physicians and nursing staff working in peripheral hospitals need to be trained in rehabilitative management of such patients. It is easier to transport these patients to local hospitals for day-to-day care and management. This can go a long way in alleviating anxiety in the caregivers.

5. Regular telephonic conversation with the caregivers and encouragement can go a long way in improving the mental health of caregivers besides helping in follow-up of the patient.

Conclusion

Anxiety and depression in caregivers of head injury is a genuine problem often ignored in our setup. Most studies point out that the depression and anxiety levels do not depend on the severity of head injury. Studies also point out that this stress has a negative impact on the recovery of the survivor. Adequate training and confidence building in attendants, prompt recognition of signs of depression, support groups, and regular telephonic conversation can go a long way in helping people with these problems.

Financial Support

None.

Authors’ Contribution

The authors submit this review article as their original work. The author contributions are as under

1. Yawar Shoaib: Concept, design, literature search, manuscript writing.

2. Amit Dagar: Manuscript review and editing.

3. Abraq Asma Reyaz: Manuscript review.

Conflict of Interest

None.

Acknowledgments

None.

• References

• 1 Bener A, Omar AO, Ahmad AE, Al-Mulla FH, Abdul RahmanYS. The pattern of traumatic brain injuries: a country undergoing rapid development. Brain Inj 2010; 24 (02) 74-80
• 2 Boschen K, Gargaro J, Gan C, Gerber G, Brandys C. Family interventions after acquired brain injury and other chronic conditions: a critical appraisal of the quality of the evidence. NeuroRehabilitation 2007; 22 (01) 19-41
• 3 Mauss-Clum N, Ryan M. Brain injury and the family. J Neurosurg Nurs 1981; 13 (04) 165-169
• 4 Linn RT, Allen K, Willer BS. Affective symptoms in the chronic stage of traumatic brain injury: a study of married couples. Brain Inj 1994; 8 (02) 135-147
• 5 Derogatis LR. SCL-90 Administration, Scoring and Procedures Manual-II for the Revised Version and Other Instruments of Psychopathology Rating Scale Series. Towson, Baltimore, MD: Clinical Psychometric Research; 1983
• 6 Derogatis LR, Melisaratos N. The Brief Symptom Inventory: an introductory report. Psychol Med 1983; 13 (03) 595-605
• 7 Kreutzer JS, Gervasio AH, Camplair PS. Patient correlates of caregivers’ distress and family functioning after traumatic brain injury. Brain Inj 1994; 8 (03) 211-230
• 8 Kreutzer JS, Gervasio AH, Camplair PS. Primary caregivers’ psychological status and family functioning after traumatic brain injury. Brain Inj 1994; 8 (03) 197-210
• 9 Gervasio AH, Kreutzer JS. Kinship and family members’ psychological distress after traumatic brain injury: a large sample study. J Head Trauma Rehabil 1997; 12: 14-26
• 10 Wade SL, Stancin T, Taylor HG, Drotar D, Yeates KO, Minich NM. Interpersonal stressors and resources as predictors of parental adaptation following pediatric traumatic injury. J Consult Clin Psychol 2004; 72 (05) 776-784
• 11 Campbell CH. Needs of relatives and helpfulness of support groups in severe head injury. Rehabil Nurs 1988; 13 (06) 320-325
• 12 Armstrong K, Kerns KA. The assessment of parent needs following paediatric traumatic brain injury. Pediatr Rehabil 2002; 5 (03) 149-160
• 13 Engli M, Kirsivali-Farmer K. Needs of family members of critically ill patients with and without acute brain injury. J Neurosci Nurs 1993; 25 (02) 78-85
• 14 Gillen R, Tennen H, Affleck G, Steinpreis R. Distress, depressive symptoms, and depressive disorder among caregivers of patients with brain injury. J Head Trauma Rehabil 1998; 13 (03) 31-43
• 15 Douglas JM, Spellacy FJ. Correlates of depression in adults with severe traumatic brain injury and their carers. Brain Inj 2000; 14 (01) 71-88
• 16 Zung WW. A Self-Rating Depression Scale. Arch Gen Psychiatry 1965; 12: 63-70
• 17 Ponsford J, Olver J, Ponsford M, Nelms R. Long-term adjustment of families following traumatic brain injury where comprehensive rehabilitation has been provided. Brain Inj 2003; 17 (06) 453-468
• 18 Kreutzer JS, Rapport LJ, Marwitz JH. et al. Caregivers’ well-being after traumatic brain injury: a multicenter prospective investigation. Arch Phys Med Rehabil 2009; 90 (06) 939-946
• 19 Derogatis LR. BSI-18. Brief System Inventory 18. Minneapolis, MN: NCS Pearson; 2000
• 20 Hibbard MR, Uysal S, Kepler K, Bogdany J, Silver J. Axis I psychopathology in individuals with traumatic brain injury. J Head Trauma Rehabil 1998; 13 (04) 24-39
• 21 Fann JR, Burington B, Leonetti A, Jaffe K, Katon WJ, Thompson RS. Psychiatric illness following traumatic brain injury in an adult health maintenance organization population. Arch Gen Psychiatry 2004; 61 (01) 53-61
• 22 Kreutzer JS, Seel RT, Gourley E. The prevalence and symptom rates of depression after traumatic brain injury: a comprehensive examination. Brain Inj 2001; 15 (07) 563-576
• 23 Seel RT, Kreutzer JS, Rosenthal M, Hammond FM, Corrigan JD, Black K. Depression after traumatic brain injury: a National Institute on Disability and Rehabilitation Research Model Systems multicenter investigation. Arch Phys Med Rehabil 2003; 84 (02) 177-184
• 24 Wade SL, Gerry TaylorH, Yeates KO. et al. Long-term parental and family adaptation following pediatric brain injury. J Pediatr Psychol 2006; 31 (10) 1072-1083
• 25 Nabors N, Seacat J, Rosenthal M. Predictors of caregiver burden following traumatic brain injury. Brain Inj 2002; 16 (12) 1039-1050
• 26 Ennis N, Rosenbloom BN, Canzian S, Topolovec-Vranic J. Depression and anxiety in parent versus spouse caregivers of adult patients with traumatic brain injury: a systematic review. Neuropsychol Rehabil 2013; 23 (01) 1-18
• 27 Sander AM, Caroselli JS, High Jr WM, Becker C, Neese L, Scheibel R. Relationship of family functioning to progress in a post-acute rehabilitation programme following traumatic brain injury. Brain Inj 2002; 16 (08) 649-657
• 28 Syed HassanST, Jamaludin H, Abd RamanR, Mohd RijiH, Wan Fei K. Mental trauma experienced by caregivers of patients with diffuse axonal injury or severe traumatic brain injury. Trauma Mon 2013; 18 (02) 56-61
• 29 Carlozzi NE, Kratz AL, Sander AM. et al. Health-related quality of life in caregivers of individuals with traumatic brain injury: development of a conceptual model. Arch Phys Med Rehabil 2015; 96 (01) 105-113